8. CASE: Who Should Decide?

This case concerns a 35-year-old developmentally delayed female patient (functional age about 5 years old); her mother is her legal guardian. The patient tested positive for a BRCA gene mutation. Her mother is concerned that her daughter may develop ovarian cancer and wants her to have preventive surgery.

Her physician does not believe this is in the patient’s best interests for the following reasons:

  1. There is only a 15-30% chance she may develop the disease
  2. The procedure does not offer a guarantee against developing cancer
  3. The patient has high risk co-morbid conditions including pulmonary stenosis
  4. The patient is highly averse to medical procedures (becomes extremely anxious and agitated).

Her physician is questioning the mother’s decision and if the surgery should even be offered. He feels surveillance/ screening for the purposes of early detection and treatment is the best option.

  • How do you approach this case?
  • What ethics issues must be considered?
  • Where do the value tensions lie in this situation?
  • Should the mother’s request for surgery be granted despite the physician’s expert opinion?
  • Should the daughter’s aversion to medical procedures be considered?
  • Who should make this decision?

Some Values and Ethics Issues to Consider

  • Capacity
  • Respect for patient autonomy
  • Respect for professional integrity
  • Substitute decision-makers
  • Resource allocation
  • Quality of life
  • Risk

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